Tag Archives: hospice

H is for Hospice Work

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This post is part of the Pagan Blog Project (PBP). It’s the first one for the letter H. The illustrations are ads from a campaign for a stationary hospice in the USA. You can see the whole series in better solution at the copy writer’s website.

As you may have read in my earlier PBP post on Death, I have been participating in a weekly training course for volunteer hospice workers since early November. So let me start by giving you a few facts about the volunteer hospice training I got and the actual volunteer work I do so you get an idea where I’m coming from on this.

The last meeting of my training group will be next week, and until then we’ll have logged about 100 hours of training. That training alone was an experience I wouldn’t want to miss! We have learned communication skills, talked about ethics and how to keep a non-judgmental attitude, learned a few basics about dementia, palliative care, and what happens during the process of dying and after death, explored the role of spirituality and rituals, learned about grief and bereavement, were informed about the legal limitations of what we can and can’t do (for insurance reasons), and have done a lot of introspection about our motivations, our own experiences with illness, grief, and death. After that, there will be regular feedback for the documentation we write for the hospice service after each visit (so they know what’s going on in any given hospice relationship and how we cope with it), monthly supervision, and opportunities to do further training on particular aspects of the work we do. While I still expect to make mistakes along the way, I felt as well-trained and well-supported at this service as one can be when I began my first volunteer assignment a few weeks ago.

“My” organization is an ambulant hospice service, which means we go where the people we serve are living: into their private households, into nursing homes, and occasionally into hospitals (there is a saying: hospice is not necessarily a physical place, but it’s an attitude or concept). We serve people who are living with a terminal illness and/or their families and other close ones. What we do there is as varied as the people we serve. Some need help with running errands or doing paperwork, others need someone to talk to about difficult topics who isn’t part of their family/circle of friends, yet others need someone to just sit quietly with them and maybe hold their hand, and others yet again need someone to take care of their pets or children or plants. Sometimes we are called to visit the dying person themselves, other times we are asked to support their wife/husband/partner, adult child, or other (familial) caretaker. The basic idea is that we offer a certain amount of time (usually about three hours a week) and the people we serve decide what they want to do with that time (within the limits we stated – e.g. a volunteer may not want to work with children or dogs, may not want to cook or be able to carry heavy groceries, or may be uncomfortable in the house of a heavy smoker). It is assumed that everyone we serve can and will make their own decisions about their own lives (just as they’ve usually done for many decades before we met them), and we are to accept these decisions, even if we don’t like them or don’t agree with them. It’s not our job to judge the people we serve and we’re not supposed to “fix” anyone’s life, give them advice about what would be best for them or their families, or make decisions for them.

[Photo of an old man and a boy playing cards. Text: "Hospice isn't just about dying peacefully. It's about living until you die."]

And that brings me to the central aspect of this work for me: the element of what I want to call ego-less service. By this I mean a service that isn’t done primarily because we want something for ourselves, but because we want to serve someone else and their needs and wants. I’m using the term “ego-less” instead of “selfless” because we’re not asked to do away with our personalities/selves or give up our boundaries. A hospice volunteer is not an emotional service-bot but a human being with a unique history and personality – just like the people we serve. In fact, I believe we can only be good hospice workers if we actually have a full life to return to after our visits, and that anything else will eventually lead to burn-out.

The idea of such ego-less (or low-ego) service isn’t exactly new to me. In fact, I’ve been encountering it in various contexts (and I’m not even counting my experiences as a customer of various service professionals here). Paid work as a customer service agent via telephone. Reading intelligent BDSM novels that center on giving and receiving service (such as Laura Antoniou’s Marketplace series) and talking to BDSM practitioners who are into providing (or receiving) non-sexual service. Possibly even providing tarot readings for fellow members of Aeclectic Tarot Forum and a few other friends. And now volunteer hospice work.

None of these things seem to work really well if the person providing the service does these things with an ego-centric attitude. Sure, I can “egoistically” strive to become the best customer service agent (I’ll use this example because I think it’s the most relateable one from my list) compared to my colleagues, but the quality of my service will still be measured by how well I fulfilled the needs of someone else (= the customer). There are two components to a customer service contact: emotions and facts/deeds. That means, a good customer service agent needs to first take care of people’s disappointment or anger or fear (which is usually done by listening to these emotions and validating them), and then(!) give them the information they need, or do whatever else needs to be done to solve the problem at hand (at least as much as possible). Maybe you’ve been in a situation where you received a technically good solution for your problem from a customer service provider but still felt as bad as before, if not worse. That’s usually because nobody took care of your emotions and that means you only got half of the solution you actually needed. On the other hand, if all you got was an open ear and believable sympathy but your delivery will still be late with no refund, you’re likely to still feel better than before, and to feel you’ve still received adequate service. That’s how important the “emotional labor” part of customer service is.

I believe I can take valuable lessons from my customer service experience over into my hospice work. Focusing on the needs and desires of someone else and doing something that makes them feel better was indeed a fulfilling thing to do. I actually often enjoyed dealing with the challenges of the “difficult” customers (which are usually those with strong emotions) and was proud if they were once again calm and content when I said goodbye to them after a few minutes. The difference seemed to be that I always acknowledged their feelings as appropriate, right at the beginning of the conversation. And no, I didn’t have to fake that sympathy very often: after all, I’ve been a customer of similar businesses myself and know how frustrating it is when a delivery doesn’t arrive in the specified time, when I’ve received a damaged item, when a refund isn’t issued immediately, etc. (This was definitely made easier by the fact that I usually wasn’t the one who was responsible for the original problems, so I didn’t have to confront them as my own failures.)

[Photo of two old women playing cards and laughing. Text: "Sometimes the best pain medication isn't medication."]

There is one thing, however, that I can’t and shouldn’t take over from customer service into hospice work. As a customer service agent, I was expected to take over responsibility, find a solution, and generally do all the “doing” necessary to fix the problem. As a hospice volunteer, this is the one major thing I’m not supposed to do. Sometimes that’s hard for me to do. After all, I’m a pretty good “fixer” in my everyday life. I still have a job where I’m supposed to solve problems (preferably before they come into existence), and I have a tendency to suggest solutions when someone tells me of a problem they have. (Which is why – when I’m not sure what is

desired – I’ve taken up the habit of asking if the friend in question needs me to just shut up and listen or if they want me to brainstorm potential solutions with them.)

But that’s exactly why I enjoy the challenge to do things differently in my volunteer work so much. I get to grow beyond who I am already. I get to try out and train different sides of me. Here’s one more example. As I described over in the D is for Death post, I’ve already done some hospice-related work last year when I visited people with dementia in a nursing home every week for a few months. This was a context where the skills I’m usually valued for were of very little relevance. It was irrelevant if I was good a expressing things verbally. It was irrelevant if I could argue well, understand academic texts, work with a variety of computer programs, organize events, or read obsessively. What was needed instead were my emotional capabilities – the ones that are otherwise often underestimated, ridiculed, or denied to be existing in the first place. Was I able to feel and express sympathy with someone’s sadness, grief, or anger, even if I didn’t understand why they were feeling that way in the first place, and even if I had no way of “fixing” the problem (the dementia wouldn’t go away, no matter what I did!)? Was I able to empathize with and validate all of the emotions of all of the different family members without taking sides or involving myself with their dynamics in any other way? Surprisingly, I seemed to be rather good at this for the most time, and I often went away from these encounters feeling incredibly blessed for having had them. There were some moments when the people I visited or their family members expressed profound gratitude for what I was doing – which often wasn’t doing much of anything but being there, listening, and accepting whatever came up.

So of course I get something back from this work, even though I initially started it because I felt a strong call to do something that didn’t primarily benefit myself and “people like me and my friends” (unlike my previous volunteer work of 10+ years as an organizer of countless no-budget LGBTQ subcultural events had done). I had a strong feeling that I needed to branch out and do something that wasn’t primarily about me and my interests and my idea of a good time. And yet, of course I still do something that matters to me, something I’m interested in, something that I ultimately enjoy doing. Here are some more of the benefits of this work: I often get to skip the small talk and jump right into what really matters. I get to let go of all the identity labels I usually wear and be a human being who is spending (often very intimate) time with another human being. I get to make something that is a taboo for many a little less scary and a little more accessible (often by the simple fact of telling someone what it is I do). I get to shut up and listen and let someone else call the shots for a while.

[Photo of an old man laughing and half hiding his face behind his arm. Text: "It's okay to cry when someone is dying. It's also okay to laugh."]

I’m also quietly amused by the fact that much of this almost sounds like what other people say about why they like to bottom (= be the “passive”/receptive one) in their BDSM encounters… And indeed, there seem to be some interesting similarities between BDSM service and hospice work. The focus on the needs and desires of someone else and the willingness to fulfill them if possible within the negotiated frame is probably the most obvious one. Certain communication skills (including nonverbal ones), attention to everyone’s boundaries, a heightened awareness of power dynamics, a strong emphasis on issues of consent (and ethics in general), respect for people who are into different things than you are and a generally non-judgmental attitude are other important aspects of hospice work that I’ve also encountered in connection with BDSM.

And then there’s spirituality and the idea of a spiritual service. While I haven’t been called by any particular spiritual being to do a certain kind of work as a service to either them (such as when people dedicate their volunteer work to a specific deity) or my community (such as the “classic” shamans I mentioned earlier) or both, I still see a spiritual component to my hospice work.  I’ve been trying to find words to better describe what I mean by “a spiritual component” but I’m still failing to do so right now. What I can say is that I don’t mean we constantly have deep, meaningful conversations about faith or the afterlife (or the lack thereof) with the people we serve – although the topic does come up occasionally. Maybe it really boils down to the fact that I feel inexplicably called to do this work…

And with that I unceremoniously break off and take note of the fact that I don’t have any “final” words to say on this topic, yet. I expect it will come up again in some way later on.

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Here are two further links that seemed to provide some useful information:

Hospice Foundation of America (HFA) Blog – discusses a variety of topics related to hospice work.
Handbook for Mortals: Guidance for People Facing Serious Illness – basic information about facing serious illness, about the dying process, and a bunch of related issues

D is for Death

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This post is part of the Pagan Blog Project. It’s the first one for the letter D.

My interest in death is a relatively recent one. While I sometimes joke that I might have become a gothic if I was willing to devote more time to perfecting my appearance (clothing, make-up, hair), I could never identify with this subculture’s obsession with death. Sure, I enjoy a good vampire story every now and then (not that vampires are technically dead), and I’ve worn my share of skulls and crossbones, but that’s about it. Death just wasn’t anything that happened in my life.

And when death first did happen in my life, when my grandfather died as I was about 16, it still left me pretty cold. I hadn’t liked him in life, we never were close, so his death didn’t actually concern me much. I do remember silently (and rather cynically) telling him “do it better the next time round” at the funeral. I think I had the impression he hadn’t been a very happy man as I knew him, and he also didn’t seem to have made my mother (and her brother?) very happy. He wasn’t directly abusive, as far as I know, just not emotionally available. Still, death remained detached from my life.

When my grandmother died, I was 28. Her death was a long and slow one, and it began when her dementia got more and more pronounced. She had been a very important person during my childhood, adolescence, and young adulthood, and I loved her very much. We mostly lived in the same city (except for three years when my family relocated due to my father’s job situation), but I had moved away for good at 21, so I only saw her a couple of times a year. Her world became smaller and smaller, until she stopped leaving her apartment altogether (except for rare accompanied visits to the doctor). Looking back, I wish I had known more about dementia back then so I had been able to better understand her world in those last few years. As it was, I just felt that she slowly disappeared into a loop of forgetfulness and only peeked out of that very rarely. I did what I could to make her look at me once again with that very particular twinkle in her eyes. In the very end, she had to move to a nursing home, where I visited her once. I remember pushing her outside in her wheelchair. She eventually said (as she had done several times before on different occasions) “I think the dear Lord has forgotten me,” which I took to mean she wouldn’t mind if he summoned her into the Heaven (her imagery, not mine) sometime soon. So I told her something to the effect that she could go if she wanted to because I somehow believed she needed that permission (no idea why, really).

Anyhow, eventually she did die. I expected myself to cry and be very sad because she had been so important in my life, but I found that I didn’t feel much at first. She had been very old (90+ years), she had been on her way out for years and years, so this was hardly a shock. Especially since I had the feeling she had been ready to go for quite a while. I found the funeral pretty terrible. It was held in a chapel-like room of a funeral home, by a pastor who hadn’t known her and who had written his speech after interviewing one or two of her three sons. There was only a sentence or two about her attitude towards us grandchildren, which felt completely out of balance to me – after all, she had been a grandmother for nearly half of her life, and a very active and present one at that! I was completely surprised to learn that she had loved to sing, and silently promised that I would accept the heritage of the singing (a promise which I still have to fulfill – but I’m slowly inching my way towards that, starting from a position where I’d never sing in anyone’s presence). It was a Christian funeral, and that felt very alien to me. That said, I was surprised how moved I still was and that I actually started crying in the end. I didn’t think of myself as much of a spiritual person back then, but I clearly remember “sending” a spiral to balance/counter the sign of the cross the pastor made at the end. It went right through the cross. Again, I have no idea where that impulse came from.

In the late summer of 2008, my father was diagnosed with pancreatic cancer. He got chemotherapy, he got surgery, and for a while it all seemed hopeful. I still massively increased the frequency of my visits with my parents (whom I had seen maybe once or twice a year before) and ended up going there every other weekend or so. In that winter, he went back into the hospital, and I remember the whole family visiting him in there on Christmas. I sat by his bed, talking to him, and he gave my an article about “modern” ways of organizing work he thought I’d be interested in. I made him an envelope full of collages that were meant to show him what memories of our shared life I cherished and that I loved him just the way he was. I told him I was proud to be his daughter and that I loved him. I also saw him cry, for the first and only time. That moment still has a very special place in my heart.

There was talk of him moving into a hospice, and my sister and I went to check out the one in my parents’ hometown (a wonderful place that felt completely right to me). We also thought about  bringing him home again, but I don’t think that ever really was an option for my mother. I don’t remember any medical details, just that there was to be another surgery, and that I had a very bad feeling about it, fearing he wouldn’t survive the operation. I even opened a thread on a tarot forum I was a member of and asked people to pray and send good energy to him. The outpouring of love from total strangers was incredible, and I felt very blessed by it. Anyhow, for whatever reason, the surgery was postponed a few days, and I still believe that this was partly why he did survive it. So that’s how he started the year 2009: fresh out of surgery, but with the devastating result that his whole belly was full of metastases and that the surgeons hadn’t even tried to remove any of them. That was when death finally became a resident in my life.

A few days later, the whole hospital had to be evacuated so that four old war bombs in the area could be safely defused (or detonated). That didn’t add much to a peaceful recovery from that surgery for him. After the bomb action was over, he was transferred to the palliative care ward. I’m not entirely sure why he didn’t move into the hospice but I think it was considered too strenuous for him. (I’m surprised myself how little I remember of the medical facts and related issues, but since I got most of the information by phone, and my auditory memory is not the best, that might account for some of that. And then I think I was simply focused on other things, like the emotional situation of everyone.) About a week later, I went to a workshop to build a frame drum (I hadn’t even successfully journeyed back then, but for some reason I knew I needed to make a drum). The following Monday, I received a letter from my university, telling me that my Master’s thesis proposal had been accepted and that I now had four months to write its 80-100 pages. What timing.

The next day, I got a phone call from my sister that I should come to my parents’ hometown because it looked as if my father would die soon. I threw a few things into a bag, called my workplace, my Beloved called his, and off we went (my Beloved driving us). I think we were about half an hour from the hospital, still on the autobahn, when my mother called and told me that my father had just died. I said I definitely wanted to see him and that they should wait for me there. We hung up, and a few minutes later, the clouds right in front of us opened up in a peculiar shape and I saw a beam of sunlight in beautiful colors. I was certain that this had been a sign from my Dad, saying goodbye to me.

We arrived at the hospital, were greeted by my sister who took us to his room (I hadn’t been there before). He was lying in his bed, his hands on his chest, one on top of the other, his chin supported by a plastic thingie to prevent his head from falling forward. He was oddly yellow. I went over and touched his hands, looking at his dead face, which looked like him and yet not really like him. We hung around in the room for a while, eating bland cookies and drinking tea or coffee. It was a very liminal time, with him being both there and gone. Eventually, we went home to my mother’s place, taking a big plastic bag full of his clothes (not sure why I remember this detail so well).

After that, there was a flurry of activity. A funeral home had to be called, a date for the service had to be set, an obituary and funeral service invitations had to be worded and designed, clothes had to be picked, etc. My parents had decided and prepared a lot of things beforehand, so it was a comparatively organized and smooth process. I felt strange about using the same funeral home that had handled things when my grandmother died, but I didn’t argue (the experience of having someone try and sell their “prettifying dead people skills” to me/us was still pretty jarring to me). Since my father wasn’t a member of any church and didn’t believe in any god (as far as I know), we had to decide what to do about a speech. I offered to write something and read it myself. Then my sister also wanted to write and read something. And then we decided to ask a cousin of my father to add a third part of the speech and say something about their youth which we as his children of course hadn’t witnessed. My sister initially found she was overwhelmed with the task of writing a speech, despite wanting to do so, and wanted to use somebody else’s words instead. Eventually, I was able to coach her in writing in her own words and helped her edit the text to something that flowed nicely. It was very odd how easily my mother, my sister, and I were able to agree on the fundamental things, given how very different our personalities are and how often we disagree otherwise. It was a beautiful experience.

On the day of the service, I felt very official. I knew I had a role to fulfill, and a part of me felt that I had taken on parts in our family dynamic that had previously been my father’s (my mother did a similar thing in a different way when she started wearing his sweaters, his wedding band, and used the frame from his glasses when she had to get new ones for herself). I felt very much like my father’s daughter, more than ever before. I was incredibly grateful that we had had time to say the important things, that we had gotten some extra time by the postponing of the second surgery, and that he had been in my life. I smiled, I nodded to people, I checked in with the funeral home people who were in charge of starting the music and the end of the service, and I generally provided structure for everyone. My father’s cousin started the service, telling stories of their youth, stopping to cry a bit, and weaving a thread to the present. He ended by putting a tenderly wrapped potato onto the coffin, because that was something my father had mentioned to him when he asked him about something he missed. I was deeply touched by that gesture. My sister was next, and she did wonderfully, especially since public speaking isn’t something she’s used to. She also stopped to cry at some point. As the older sister, I went last. I stood behind the lectern, looked out at all these people who had known my Dad and cared enough about him to come to his funeral, even if I didn’t know at least a third of them, and started reading. I was glad I didn’t also cry, but somehow that was not the time for it. Instead, I beamed all over my face because I was so grateful and the service was so perfect. I ended with announcing the music my father had picked himself: What a Wonderful World by Louis Armstrong. After that, people lit candles or put down a rose on/near his coffin, and slowly we all went outside. I smiled some more, I shook hands, I talked to people, and we were told over and over again how beautiful and moving the service had been.

I was proud of us and how well we had done. I was surprised by how right I felt in the role of the speaker at this funeral. I was stunned how unusual our DIY service apparently had been, when it seemed the only way to do this properly to me (meaning, that a funeral speech should preferably be held by people who had known and loved the person who died, not by some random professional who had no real connection to anyone present). I was equally stunned to hear how creepy or, well, unusual many people found the idea of touching a dead person. And ever since then, I have had a strong feeling that I was supposed to do something “around death.”

I paid more attention to things one could do in relation to death. I read stuff. I started to find dead animals that I had to take care of in one way or the other. And in late January 2011, I finally went to a volunteer fair to check out the local organizations that provide hospice work. It seemed that I was supposed to work with the dying and their close ones. I found one organization that enabled me to start visiting people (all of whom had serious dementia, which taught me a whole lot of Very Important Things in itself) in a nursing home they cooperated with. I ended up visiting three people once or twice who then died. In two of the cases I also met some of the family members and talked to them in the function of a hospice volunteer. This work has always left me very fulfilled, even though (or probably because) it had not been about me at all. My job was to give my time and attention to whatever I found on any given day. My job was to stay and be there and listen. And I found that I did surprisingly well, given that I’m often more of a talker and “fixer” than a listener and someone who just accepts things/people. There are also some side effects that I didn’t plan on. I’ve become more conscious of the value of life. I’m even less willing to waste time with things I consider pointless. My priorities have shifted. I also eventually realized that I started hoping that everyone would have the chance of saying goodbye to life and loved ones instead of being ripped from life completely unexpectedly. I’m also not hoping for a sudden (read, unexpected) death for myself anymore.

The actual hospice training was meant to start in late fall last year, but I changed organizations immediately before that (I had found that while the original one was fair enough, the new one is a much better fit for me). So that’s what I’m doing right now: getting properly trained to volunteer with that new hospice service. The course will run until the end of March, but – due to my experience – I’m officially in their files as an available volunteer already, which means they could call me any day and ask me to start visiting someone again.

To this day, I am not quite sure why death suddenly became a topic I need to work with, but my gut feeling is very clear on that (there were umpteen other volunteer jobs at that fair alone that I also found interesting and worthwhile, but it was clear they weren’t meant for me). So, basically, I’m just trusting the Universe here to let me know where I need to go. Maybe a part of this has to do with death being such a taboo in most of the Western world. Maybe I can adapt my skills in creating ways for people to talk about taboo subjects that I acquired around the topic of sex. Maybe I will only find out later what this is all about. And that’s fine with me. For the time being, I just need to know that it’s the thing for me to do.